Hi well first 10 days on chemo and blood test and telephone consultation with hospital doctor. Good news the red cells count is coming down in the right way not to fast not to slow and white cells are staying stable. Nice to have some good news but a phone call is not really as good as face to face but he did take his time and answered all my questions. As it was going well no really bad side effects I can go 4 weeks without a check. I must carry my key worker card with me and watch my temperature but carry on as I have been doing but still no golf.
2 Likes
Thatās great to hear and may the trajectory continue. Thanks for the update and telling us itās going wellā¦
Hopefully the greens are ever so closer
1 Like
Hi @Carolemavis that is good news, I find telephone consultations came be fine.
But I find myself looking at the phone till it rings and then I jump out of my skin when it does and I am trying to hold a phone and find bits, write notes etc.
However there is nothing like a face to face consultation and interaction.
Take lots special care of yourself
I am at the moment in limbo, I know I am getting somewhere with having the chemo but, as people cant see I am ill they tend to think I can just carry on and do everything I did before, especially round the house. I know sometimes I need to feel looked after but as a women and mother we are expected to just carry on. I know this is a bit of me feeling sorry for myself but it feels good to get if of my chest. I normally do feel ok but sometimes when the fatigued hits it is hard to explain I cant carry on. How do others get this across to family and friends.
3 Likes
Hi @Carolemavis hidden disabilities are so difficult, arenāt they.
I attach the Blood Cancer UK information on Polycythaemia vera (PV)
Polycythaemia vera (PV) | Blood Cancer UK
Blood cancer and fatigue | Blood Cancer UK
You can always give these details to family and friends.
Perhaps be pleasantly assertive and say your needs once in a while, otherwise I find others will expect me to just get on with it and then I get very resentful.
Be very kind to yourself, you are worth it xxxx
Hi @Carolemavis
Fatigue is like wading through treacle at times and it can feel upsetting then our emotions go all over the place and we get it into our mind no one cares
My kids are now used to me having days I canāt do much.
If I need help I ask for it rather than getting cross because they donāt think about me.
Iām a single mum and have encouraged my kids not to be my carer.
If I canāt do the washing up or iron or make dinner I donāt do it. Or I do it in little bursts.
If I canāt clean I do it another day.
I spoil myself like ordering a coffee to be delivered
On the days I really donāt feel like cooking we order a takeaway to be delivered
I call them my rest days 
my kids do jest with me Iām lazy and we laugh about it
After 7 years I think they just accept it is what it is.
Just be kind to yourself do little things that make you happy and delegate
If things donāt get done they donāt get done
3 Likes
Hi thanks it is great to know I am not the only one . I like you dont want a carer just a bit of help. I am a independent person and it does come hard to ask but I am learning to do it also take my days as they come but it is early days for me. It is great to hear from others going through this journey.
5 Likes